Monday, October 17, 2005

Pre-op: The hospital pre-op appointment

Often referred to as "the pre-op," this is different from pre-op appointments with your surgeon. At that appointment (or several appointments) you explore the reasons for your hyst, make plans for many optional parts of your surgey and followup care, and sign (after discussing) your surgical consent.

But for "the pre-op" you'll most typically be going to the hospital and/or the office of the anesthesia group that will be providing that portion of your surgical services. Here's what you can expect at each.

At the hospital

You can expect to be spending some time with the billing office, getting your registration and billing information recorded and signing the multitude of forms the hospital requires before accepting you as a customer. You should bring in or be prepared to provide such information as your insurance billing details, next of kin/emergency consent contact, who will be the contact during the time you are in surgery, living will (if you have one), and any special needs you may have (a translator? assistive devices for basic communications? religious practice needs? visitor restrictions for personal safety or preference?). If you are not covered by insurance, be sure to be prepared to set up a payment schedule and ask for a discount for paying cash; bring your credit card as well.

You may be given paperwork to bring back with you upon admission. Be sure to check what the procedures required on the day of your admittance are: when your surgeon told you to be there at 8 am, he meant to begin the stuff he is concerned with; the hospital office may also need your time then, and you don't want to be late for your surgeon because of competing demands for your time. This is also a good time to ask whether you will need to stop at the billing office on your way out of the hospital when you are discharged: at some hospitals this is routine (and tiresome) and other hospitals take care of all of this at your pre-op visit, freeing you to just cruise out whenever your doctor gives the okay. Be sure to ask when checkout is during the day, lest you end up paying for an extra day's stay because you lingered an unnecessary half hour over the limit. If you plan to ask for a copy of your hospital records, this is also a good time to ask the procedure for obtaining them (although you may be referred to another department for this).

If you have not already had these done at your doctor's office, you may also be asked to visit the lab, x-ray and ekg to have routine pre-op studies done. Not all of these are required for all women, but generally some or all of them are simply part of a last-minute check to make sure that other problems will not interfere with your surgical procedure. Aside from the stick for blood, none of them are invasive or especially uncomfortable.

If you are being typed and cross-matched for blood that will be held for a possible transfusion, you may be given an ID bracelet and required to put it on. This is dorky-looking but necessary--it holds your half of the only key that assures that the held blood has been tested for compatibility with your own. If you lose your key, the blood is wasted (and you'll be charged for it) as well as not available should you need it; re-matching you will take time that you may be ill-able to afford in an emergency. If wearing a paper bracelet for several days is especially distasteful for you for some reason, you may be able to negotiate having it placed around your ankle instead. If that is the case, be sure to let everyone know where it is on the day you're admitted (where everyone means your doctor, the circulating nurse in the operating room, and anesthesia) and ask that it be noted on the front of the chart when you are being checked in.

Anesthesia

The other part of "the pre-op" is generally a visit to someone from the anesthesia group. This is a special medical practice, separate from your surgeon. Typically this service is provided by a pool of doctors (anesthesiologists) and perhaps nurses (anesthetists), and you will be billed separately by this group for their services. The practitioner you see may not be the one who will care for you during your surgery, but he will write notes and perhaps some orders that will go in your chart for the person actually in the OR.

This appointment is primarily an interview, although it is likely that the practitioner will examine your head and neck, and look into your mouth (or at your back, if you are having a spinal--and some of the following will not be applicable if that is the case). This is to identify any problems that may make putting the tube into your lungs (through which they will maintain your respirations once you are under general anesthesia) tricky. In particular, you will be asked if you have any dental appliances or chipped teeth--it's important to let them know this so that they can avoid damaging them with the instruments being used.

Other things anesthesia will discuss include previous experiences you've had with anesthesia and other health conditions you may have that might affect your toleration of anesthesia drugs. This is also the time to share any fears you may have about anesthesia, review any meds you may be given to relax you beforehand, and to discuss nausea in the immediate postop recovery period. If you are prone to nausea, let them know: it's possible to medicate you before you start puking, which can be A Very Good Thing when having abdominal surgery. If you have had bad experiences in the past with pain medications, like itchy/rash reactions, do be sure to let them know this, even if it's not a real allergy.

Anesthesia will review with you the timing of when you may last eat/drink anything (not what you may eat or drink--this may be up to your surgeon). Fasting is very very important to prevent vomiting during the process of going under--something that can cause pneumonia--so be sure you understand your restrictions and that they are for your benefit. If you plan to take some regular meds or supplements in the fasting hours before surgery, please check these with anesthesia and ask what/how much you may take them with if they are oral meds. Diabetics or asthmatics have a special need to review what they will be taking before surgery, what their normal maintenance regimens are, and how their needs will be managed during surgery and recovery. The whole goal of this appointment is to make anesthesia as successful and little stressful for you as possible, so the more you can help your anesthetist, the better things will go for you.

And one last note about all of the pre-op contacts you may have just before or the day of surgery: don't be surprised if, over and over, you are asked specifically what procedure you are having (and if something is happening only to one side, like only one ovary to be removed, you'll be asked to point to the involved side). This is a constant process of checking who you are and that the right person is having the right surgery--it's a much more positive identifier than asking a nervous or groggy person a question like "are you [mumbled name]?" that they might answer without really grasping. And, because it's a hyst, you may be asked several times whether you are pregnant and if you understand that having this surgery means you cannot ever again get pregnant. While this may seem like an extra added torment to many of us, it does, ultimately, protect the rights of women to understand what they are choosing. If our aggravation pays for one woman getting the message who may not previously have fully understood the implications of what she has consented to, well, don't you think it's worth it for her sake?

Friday, October 07, 2005

Pre-op decisions: Keeping your cervix, revisited

The decision to keep one's cervix may have just gotten a little simpler for some women...or their daughters, at least. As you may have noted in our previous discussion of this topic, a certain number of women opt to have their cervix removed not because of specific cervical pathology but because they want to be protected from the risk of developing cervical cancer in the future. For these women, news released this week about a new vaccine that offers protection from the most common causes of cervical cancer may allow them to make that decision differently.

I'm not sure yet how and when this is going to play out. The vaccine hasn't been approved yet, but given the large test sample and the overwhelmingly positive results, I'm having a hard time believing the US FDA is going to drag their feet in approving this.

The manufacturer notes that this vaccine "should" be given before a young woman becomes sexually active to "ensure" protection. This doesn't address its use in women who are already sexually active but perhaps are not yet infected and who could conceivably benefit from that protection. As with so many things to do with a hyst, this will need to be a personalized decision: weighing the risks of having been infected against the inpact cervical removal might have on one's sexual response. But as time goes by and more of the women who are faced with the need for a hyst have been protected by this vaccine, that decision to ditch a cervix for prophylactic reasons may become less urgent for many. And, all things considered, that's good news.

Tuesday, August 16, 2005

Pre-op decisions: we'll just take out those ovaries so you won't have to worry about cancer

If you are planning your hysterectomy, or even just investigating what it would mean for you, and your doctor offers you this "recommendation," you may want to ask him to step back and explain himself in a lot more detail.

It used to be the practice that when women were facing a hyst, a surgeon would suggest that because her ovaries "aren't needed" any more, she should have them removed now so as to remove the risk of later getting ovarian cancer. In many cases, this would include the suggestion that "most" women who retain ovaries only end up needing another surgery later to remove them anyway.

Today we know that this kind of a sales pitch is not only medically inaccurate but is in fact a strategy that holds greater odds of shortening a woman's life than the alternative. And, slowly, doctors who keep up with the news in this field are revising their recommendations to a more accurate representation of the various risks.

Much of this turnaround can be credited to this study, published in the May, 2009 issue of the journal Obstetrics & Gynecology: "Ovarian Conservation at the Time of Hysterectomy and Long-Term Health Outcomes in the Nurses’ Health Study." For something that may be a little less intimidating to read, you might try this article at webmd: "Hysterectomy: Spare Ovaries, Boost Health?." Yet another good resource is the anonymous but probably related to the study website OvaryResearch, which focuses on the study and discussion it's stimulated as well as an earlier version of it that appeared in 2005.

Okay, enough with the citations: what's this about?

The study, which involved a very large pool of women (that's good, because it means the results are more likely to really reflect us all), found that rather than lowering deaths from cancer, prophylactic oophorectomy (that's the fancy way of saying taking out ovaries for the sake of prevention) in fact had a higher risk of death from all causes but mostly heart disease and lung cancer. That's right: removing our healthy ovaries at any age does not lengthen our lives or improve our health.

Further, although breast and ovarian cancer rates were lower in women who had their ovaries removed, the risk of death from all types of cancer was higher in these women. So, yes, the very thing we feared and chose this option in hopes of preventing is actually more likely to happen to us than if we'd left well enough alone.

And the rates of death are highest for women who never supplemented their hormones after the surgery. All those women who valiently toughed out menopausal symptoms because they thought it was the right and "natural" thing to do were in fact working with their doctors to shorten their own lives.

Tragic, right? And we're talking a big tragedy here: about 300,000 women a year choose to have this surgery under the impression that it will help them live longer, healthier lives. According to the main study author, that's "50% of women who have a hysterectomy between ages 40-44...and 78% of women between ages 45-64," even though it's well demonstrated that post-menopausal ovaries continue to contribute to our hormonal support, a support that's lost when we take those ovaries out.

But wait! What about women at real risk for cancer?

Yes, of course there are women for whom the risks boil down to high expectation of death by breast or ovarian cancer vs later death by these risks of lost hormones. That's a special situation and no one is suggesting that preventative removal of ovaries might not be the right choice for them.

But it needs to be an informed choice. That means not just making the assumption that because there's "a lot of cancer" in one's family that we are, personally, at risk for these specific cancers. It requires genetic testing and evaluation by an oncological specialist, not an assurance of a gyn surgeon who heard the word "cancer" and got spooked into a slash-and-burn mentality.

Can't I just take something to make up for that risk?

For many of us, the idea of cancer is so terrifying that it shorts out our brains. Especially if we're younger women and few of our peers have died of things we attribute to aging, we may not feel that the risk of heart attack or stroke is all that vivid or personal.

One of the objections to the recommendations of this study, that more women keep healthy ovaries, is that this risk can be treated medically with statins, drugs that lower cholesterol and lipids that are believed to be a major cause of heart disease, and bisphosphonates, drugs that preserve bone density. As the study author replies, however, these drugs have notorious dropout rates, just as HRTs do. Taking out a healthy body part and replacing it with drugs that must be taken for the rest of our lives and may have significant side effects of their own: if we look at it that way, how much sense does that make?

And then there are the women who want to do it "all naturally." What do they do? Exercise and healthy eating are important lifestyle strategies for minimizing cardiovascular and osteoporosis risks, but alone they probably aren't enough for most women, not to mention that they too are something that sounds better in concept than they are actually adhered to for every remaining day of our lives. Menopausal nutraceuticals, the raw plant estrogenic compounds that are sold to reduce hot flashes in natural menopause, are relatively ineffective in coping with the level of symptoms seen with the larger drop in hormone levels due to ovarian removal. And they entirely fail to address many of the more serious effects of hormone deficiency...such as the ones that lead to the risks cited in the study. In fact, this is not a natural situation and there is no natural solution that makes up for it.

But my ovaries are diseased: what should I do?

No one is suggesting that women should not treat existing ovarian disease with surgery. But this study does suggest that we should balance our treatment options against the risks, and those risks are more sizable than our previous understanding led us to believe.

Some ovarian disorders don't require removing the whole ovary to treat, and these are poorly paid back by the increased risks.

But some disorders do require removal for definitive treatment. Sometimes, other diseases are best treated by removing our ovaries. In these cases, however, we still need to understand the costs of that treatment and we need to understand how to mitigate those costs, whether that's drugs or HRT or simply accepting that we have chosen that direction for our lives rather than the one that would have resulted from our ovarian disease.

We need to know that not having ovaries means more than not having ovarian disease.

You have to make up your own mind

This is a complex issue. Many things that can go wrong with our ovaries still don't require that we give up our ovaries. Nothing going wrong with our ovaries really doesn't seem to require their loss. The things at the other side of that equation, heart and lung disease chief among them, kill many, many more women every year.

Just as we don't necessarily believe the car salesman that the extras he's recommending will do anything more than provide him with higher profits, so we shouldn't necessarily believe the person we'll be paying to do our surgery that the extras he's recommending are more valuable to us than him. This is where second opinions are so important, getting an opinion from a doctor who doesn't profit from that advice. And where we're worried about cancer risks, we should talk with an oncologist to make sure we're evaluating our own risk accurately and not just spooked by the word itself.

This study did nothing to simplify our decision with respect to a hyst except for one thing: we simply shouldn't accept "as long as you're having a hyst" as a good reason to give up our ovaries. Because when you hear that phrase, you now know enough to hear the unspoken rest of it: "as long as you're having a hyst, why not let me give you a higher chance of an early death by heart disease or cancer?" And we simply don't need that.

[Note: This essay was revised in June 2009 to include the results of the May 2009 study.]

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Wednesday, June 22, 2005

Hysterectomy or cancer: are you sure?

I happened across an interesting news item today, a report of a newly released study in the June 2005 issue of Psychosomatic Medicine.

Many women who have their uterus removed for benign conditions may mistakenly believe that, unless they have the surgery, they're likely to develop cancer, a new study suggests.

Researchers found that among more than 1,100 women who underwent hysterectomy for non-cancerous conditions, 29 percent said they had "a lot" of fear that they would develop cancer, without the surgery. The large majority, 80 percent, reported at least "a little" fear.

The report goes on to question whether this misunderstanding is rooted in the explanations doctors are giving their patients for their options. For some of the most common reasons for a hyst, there are other treatment options that may be applicable, but women may not choose them out of (a groundless) fear of cancer.

So for every woman who is contemplating this surgery, it's vitally important that you ask your doctor explicitly why he is recommending this treatment approach and what explicitly are the consequences of not treating it this way. If you hear the word tumor (as is often used in discussing fibroids), are you sure whether you are talking benign (harmless) or malignant (can kill you)? If not, ask your doctor: is my condition cancer? will I get cancer if I don't do this? Your doctor knows what he's talking about, but his assumption that you do too may not be well-founded. It's always better to say something like "just to be sure I understand what we're talking about here, do I have cancer now or will I in the future if I don't have a hyst?" than to undergo medical treatment that may be more extreme than you really want because you didn't get the unspoken message.

Sunday, January 16, 2005

Pre-op: planning for the medications we'll be receiving

In the course of some discussions we've been having on the list, I've realized how difficult--and yet how important--it can be to make sure that our medication preferences, sensitivities, and allergies are taken into account in the planning process. While most of us know about pre-existing allergies and know that we need to tell our doctors, anesthesiolgists and caregivers about them, it's more of a grey area in the case of sensitivities or strong preferences. How can we anticipate what we might be given in order to tell our doctors what we need them to know when we have, for the most part, little idea of what we'll be getting? I thought that you might like to know the general outlines of what you can expect in terms of medications throughout your surgical experience. Mind you, these are just generalities, so you'll need to do the work of talking with your doctor and fleshing out the details.

Starting with the at-home pre-op phase, many women are told to use a specific laxative bowel prep, with various doctors preferring different combinations of agents. Some doctors do not order this, and it should not be done unless it's ordered. You may be able to negotiate the actual laxatives used if you have specific preferences.

In the in-hospital pre-op process, you will probably receive a sedative/amnesiac agent (Versed is one commonly used, but there are many others and it's a matter of physician/anesthesiologist preference) and this may be mixed with other drugs, such as atropine, that dry up your nasal/oral secretions and assist with anesthesia (generally those receiving a general get this). Once your IV is started, you may also be given an initial dose of an antibiotic.

One other thing that might pose a problem for some women in the pre-op surgical routine is exposure to a skin cleanser called Betadine. This is an iodine-based scrub that is typically used to prep before incisions. Not only is it used to scrub your belly if you're having an abdominal incision, but you may be asked to douche with it beforehand, in order to begin decreasing the number of bacteria in your vagina. This can be a harsh agent and there are a certain number of women who are simply allergic to it. If you've not encountered it before or not used it on delicate vaginal tissues, ask for a sample betadine scrub so you can do a test before using the douche. I know that I can have betadine on regular skin without any problem at all, but when I tried a little test scrub on my labia, the burning was horrific even though I washed it off immediately! I reported this to the prep nurse the next day when she tried to send me off to do the douche, and she agreed that the doctor would not want to do surgery if the prep left me blistered and burning. There are other cleansers they can use, so if you're in any doubt, ask your doc at your preop and ask for a sample to test out yourself at home before committing to placing it where it is not, ahem, easily removed.

In the OR you will receive a great many drugs, depending upon the anesthesia you choose. These are under the control, for the most part, of your anesthesiologist, and that is who you need to discuss this part with if you have any specific drug concerns. As a rule, general anesthesia today is much less stressful on the body than it was even a decade ago, so your mother-in-law's account of her reaction to surgery she had 40 years ago may not be entirely predictive of your experience. Spinal or epidural anesthesia also involves drugs given systemically as well as locally, so you will again have to review with your anesthesiologist exactly what his plan is.

In Recovery, you may receive an antinausea drug (it's possible to request preoperatively that you be medicated for nausea before you experience it, if you're worried about the possibility or previous experience leads you to believe you're prone to vomiting). You will receive pain medication IV (typically morphine or demerol) and perhaps, depending upon elapsed time, another dose of antibiotic. If your doctor is one who favors this approach, you may also be given IV Toradol, which is an anti-inflammatory of the aspirin-ibuprofen (NSAID) family. Given the recent questions raised about the Cox-2 family of drugs and heart disorders, if you have any cardiac disease, you should discuss the use of this entire family (Cox-2 and NSAID) with your cardiologist as well as your surgeon, both in terms of operative use and home use of oral anti-inflammatories.

Postop pain control tends to be IV at first, then gradually moving to IM (shots, usually in the big muscle of the butt) or perhaps straight to oral. Morphine and demerol remain the most common but there are other agents that may be used. Some doctors continue the additional Toradol so long as you have an IV. Women who retain a spinal may be also getting morphine via that mode. When the transition to orals is made, they typically are one of the codeine blends although some women go straight to oral anti-inflammatories.

Many doctors will also place you on anticoagulant shots starting in the OR and continuing for at least a day until you are up and around enough that the risk of clotting is lowered. These are tiny sticks into the fat pad of your belly, and may be the source of small bruises you'll see there. Because these shots are given early in our recovery when we're pretty bleary, many of us don't remember them at all and wonder about the tiny bruises. The drug is called heparin.

In the postop (in-hospital) period there may be several more doses of antibiotic and usually the introduction of stool softeners once you can take oral meds (once your bowels have begun making sounds signifying they are functioning). Additional vitamins or iron supplements may be ordered for those whose blood counts are low (but do not resume taking your own vitamins till you get the okay from your doc--if you double up on some of them because you're taking yours and getting some from the hospital, you can set yourself up for bleeding and other risks). If you are having problems with gas the best remedy is walking but some doctors will also order Gas-X or similar drugs to help ease the discomfort.

And those are all the usual things I can think of that might be a problem. Obviously if you take drugs for other problems, you'll be resuming those postoperatively and should be sure that you do get them if they are needed and that you get the doses you normally take unless you and your doctor have discussed making some temporary change. You may need to remind your doctor about pre-existing prescriptions, especially if they are prescribed by other doctors, so they don't forget to resume them in your postop orders. Don't assume that they are being omitted for some good reason unless you have specifically discussed doing so with your doctors--docs forget things that are outside their own routines for their surgeries, and it's up to us, ultimately, to guard our own interests.

It's a good idea for each of us to think through whether any of these drug families are a problem for us--if so, early discussion with our doctor and/or anesthesiologist will help alleviate the risk of negative reactions when you are least likely to want them: during or immediately after surgery. What if you've never had any of them? Our caregivers are alert for negative reactions, but we have a certain burden on us to report them as well. For example, if you are sensitive/allergic to morphine, you may experience annoying itching of your nose and eventually itching all over. So it's a good idea, if you start itching and have a morphine pump, to speak up early and often in asking to change to something else.

I know that I got one push of my morphine pump done by the nurse as I was getting into bed when I got to my room from Recovery, and I spent over 24 hours trying to rub my nose off my face. Luckily I didn't need the morphine again--Toradol was plenty of control for me even with a fairly sizable abdominal incision--and so it was not something I had to deal with. But this is someplace where having a friend or family member in the hospital can help us: in those first postop hours when we're too snowed to put things like this together or to advocate strongly for our needs, someone with us who can help us deal with these things can be very valuable.

My sister was the one who made the nose/morphine connection for me (I hadn't noticed I was doing it--yeah, that's how groggy), and so when I got up and the nurse went to hit the pump, she intervened and asked me if I felt I needed the morphine in the light of the reaction I might be having. I agreed that no, I felt as though I could try it without, and so I went staggering merrily off down the hall with the two of them following along shepherding my assorted catheter/IV/whatever (in retrospect I think that maybe the morphine made me more than a touch goofy, too, but at least I was up and moving). And by the next morning I was more alert and thoughtful and could take care of myself again, even though my concentration was as impaired as anyone's whose just had a general. So that is a little cautionary tale for those who are wondering what this actually works out to be like, if we have a mild sensitivity reaction.

To help you do some drug-related research, if you are unclear on exactly what drugs are related, what they include and what side effects they carry, these links might be useful:

The main takeaway point here is that it's up to us to judge how we're responding to what we're getting, not only in terms of whether we are getting, say, adequate pain relief from our meds, but whether they are suiting us in other ways as well. Remember that there are alternatives for all drugs, so gritting your teeth and putting up with something is really not necessary for anything other than the convenience of your caregivers. And that's not who it's about, is it?

Saturday, January 01, 2005

Operative uncertainties: why did I come out of the OR with a different diagnosis/surgery from the one I went in with?

I read many comments from women who are surprised to wake up from surgery without their ovaries when they thought they were only having their uterus removed, or who find that they have a whole new shopping list of diagnoses that they never expected when they went in. How can this happen? they ask. They told me that these things "might" happen but were not likely.

Doctors really get in a bind between trying to prepare you for all the eventualities and to steer you so that you're not totally overwhelmed with fear of things that just aren't likely at all. It's a hard call, and it's made vastly more difficult because the diagnostic tools we have just aren't that accurate.

That's right: for all the ultrasounds and MRIs and CAT scans and all those advanced tests, there's just nothing that is anywhere near as accurate as opening us up and looking around. It's a very common thing for women to go into the OR with one diagnosis and come out with either a different one entirely or a whole raft of unexpected discoveries.

For example, endo seems to be a surprise discovery in about half (that's a seat-of-my-pants guesstimate based on what I read online, not a firm statistic) of the women who have a hyst and endo--it's never suspected or diagnosed pre-operatively in a surprising number of cases. Another surprise diagnosis is adenomyosis, which will turn up in a hyst done for fibroids or endo without ever having shown up well in diagnostic imaging. Sometimes extensive scarring or damage from other disorders, as in a case where large fibroids actually damage ovarian circulation, is what makes the deciding difference in the operative plan, and yet scarring is virtually invisible to most diagnostic techniques. Women who have suffered from pains and miseries all their lives and who were told they simply had to put up with it as their lot in being women often are astounded and validated when they return from the OR with a whole shopping list of abdominal pathologies that remained elusive until the surgeon actually got a good, personal, eyeballs look.

The fact is, a preoperative diagnosis, while informed by every skill the doctor can bring to bear, remains only an educated guess. I think this is one reason why, unless the diagnosis is very well-defined indeed, women may be well served by having that abdominal incision. I know that I felt that since I was having the surgery one way or another, I wanted to know that as of that date, there were no more lurking surprises that might have been missed by the more limited vag approach (well, that plus the fact that my uterus was roughly the size of a steamer trunk and I strongly suspect they brought in a fork lift after I was anesthetized to get that monster out). I don't think that this is in itself necessarily a compelling enough reason to choose this route, but it is certainly an added peace of mind that helps offset those first few days when the incision is most troubling.

So I would have to say, after the years I've been involved in the hyst community online, that a pre-op diagnosis is only a "best guess" and that a wise woman and her doctor consider it a very open-ended proposition. And because our ovaries are rather fragile organs, I think that however much we may hope to keep them, they have to be considered at high risk for possible removal.

A prudent woman facing surgery should make her feelings known very clearly to her surgeon on what her stance is on ovarian pathology. I think most of us would okay removal immediately if cancer were suspected. Short of that, however, are a lot of grey-area calls. Do you want suspicious ovaries removed "just in case" or do you want them biopsied with the option of later (minor surgery with laparoscope) removal if indicated? Many doctors feel that after age 45 ovaries represent more liability than value (although that may be changing), on the premise that our bodies need hormones for nothing other than fertility. Many women in menopause disagree with this, and it's something that it's best to think out in advance (a brief hormone education that might help you explore this further is here) lest your doctor make a decision for you that you would not have favored had you been a party to it.

At the very least, you can ask your surgeon: under what conditions during the surgery will you remove my ovaries--what are the decision points for you? And if you disagree or think the matter requires evaluation at the time of surgery, you can modify your operative permit to include the specification that if ovarian removal is indicated based upon surgical findings, you only will grant consent for it through [your personal rep named in the permit, whom you have prepped with your views in great detail and whom you trust to carry out your wishes as best they can]. In such a case, the surgeon would have to contact that person (who would obviously be standing by in the waiting room through the surgery), explain the situation, and receive their consent for whatever option is proposed. This is not an unheard-of option, and one that women who have strong feelings about their ovaries have successfully taken.

So while there are unknowns we all face when we go into surgery, good planning and frank "what if" discussions with our doctors can help make sure we're better prepared for those uncertainties. When your doctor runs through that list of "possible but not likely" outcomes, stop him and ask: but what if that does happen? What then? What are my choices? What will those choices mean for my future health? And if you feel you need to, you can add language to your operative permit to specify that in a "what if" situation, the doctor will perform the option you prefer.

We can't eliminate the unknowns--they're part of the package--but we can prepare for them as well as possible so that the fear of them beforehand and the way we deal with them afterwards are at least less stressful for us. And we certainly can use a little stress reduction as we're facing this surgery.

Saturday, December 18, 2004

Pre-op: What if I am getting sick right before surgery?

So you've got your surgery scheduled, been through the pre-op appointments, got your prep ready to go and have the time when you're supposed to report to the hospital. And then it begins about a week before surgery: first a tickly throat, then a little sinus congestion, pretty soon a cough and before you know it, you're coming down to the wire and you're undeniably getting a big nasty ol' virus.

And this is the time of year when we see this most. The holiday season and early January seem to be popular times to schedule a hyst, but that's right at a time when holiday preparation stresses plus the higher exposure from shopping and visiting make us both more vulnerable and more available to pick up any little respiratory bug that's going around. And, of course, least wanting to see this happen. But it does, frequently.

The first thing to do is admit that wishful thinking is most likely not going to be an effective tactic. Waiting and hoping that it will go away is only going to take you down to the wire without having made any preparations for dealing with the situation. Here's the bottom line right away: yes, your surgery will canceled if you are sick when you arrive at the hospital. And that's as it should be: plans are one thing, but in some cases it simply isn't safe to have anesthesia and surgery when you are already ill. Is keeping to a schedule to die for, literally? Rationally: not. I'm not saying you don't deserve a few tantrums on the subject--it is woefully unfair. But there you have it.

So how do you cope with this? By admitting what's going on as soon as you notice it. Don't hide your head in the sand and do the wishful thinking thing. Instead, at the first suspicion of illness, start taking mega-good care of yourself. Most winter illnesses are viral, which means that antibiotics won't help them. The most important thing to do with a viral illness is supporting your own immune system's work in fighting it off. These are old trite remedies, but they remain the best:

  • Do get plenty of fluids.
  • Do rest when you are tired (I know, that's hard to do when you merge pre-op panic with holiday panic, but go back up and reread that bottom line if you're waffling).
  • Do turn to the fruits and vegies for vitamins and get plenty of them, every day before surgery.
  • Don't chug the vitamin pills: some of those may be on your list of things to stop pre-op because of effects they may have on blood clotting.
  • Don't eat aspirin or tylenol thinking you're helping out: your body uses a mild fever to help fight infection, so unless it's very high, it's helping rather than hurting.
  • Don't gobble cold remedies or herbs: many of them also suppress your own defenses or contain things that are contraindicated before surgery.

If you are down to that final week and counting, coming down with something also means that you need to call your surgeon. Yes, it does. Waiting until Friday night after office hours are over before you finally admit that you're not going to be well by your 7 am Monday surgery call cuts it too fine. That robs you of planning and effective treatment time, and is discourteous to the surgical staff who are expecting to see you in the OR on Monday morning. If you are in that final week and feeling the first sneaky tendrils of viral invasion or you've been fighting something all last week and aren't sure you're going to make it in time, pick up the phone at the start of that week and make your confession.

Your doctor will be the best person to advise you on whether you need to be evaluated in the office and on what particular remedies may or may not be safe preoperatively. And by bringing him in early, you are being both considerate of his time and giving him a chance to help that surgery actually be able to happen as scheduled. The antibiotics you receive during surgery are not going to turn a chest cold around and your anesthesiologist isn't going to want to work with someone with a head and chest full of snot. If you are down to the wire and it's the weekend before a Monday surgery, go ahead and call the office number and tell the answering service you have a Monday surgery, are sick, and need to speak with the on-call person covering for your doctor. Don't try to second guess your doctors with just how sick you are: the decision on how sick is too sick is a specialized one they need to make.

And if you need to reschedule, the person who has let their doctor and hospital staff know in advance that this is a pending situation and a possibility is going to get way better service than someone who shows up at the hospital Monday morning in no shape to go to the OR. And don't you want your surgical team on your side? I thought so.

Please do the mature and responsible thing, here. If you're suspecting illness and you're down to the final week before surgery, get in touch with your doctor and stay in touch. Make arrangements on Friday (or right before a holiday) if you think the situation will remain volatile through the weekend before a Monday/post-holiday surgery. It happens. Your doctor knows it; your OR team knows it. No one will blame you--if you do everything responsible to keep everyone informed and seek advice early. They'll get you rescheduled as soon as possible if you have to cancel. That's not ideal, but that's better than trying to go into the OR already sick. That's not good for anybody involved.

Friday, November 12, 2004

Pre-op: Fear

It's a truism of hysterectomies that the waiting for the surgery is the worst part of the whole thing. And like any truism, there's a great deal of validity in that statement. For most of us, a hyst may be our first experience of major surgery. For others, we know it's a gamble for better health and so it's reasonable to be edgy. Frankly, anyone who isn't worried at the prospect of a hyst is more worrisome to me.

But for other women, the fear is deeper and both more specific and more disabling. I read comments like "I'm terrified of anesthesia. I'm sure I'll never wake up." Or "I'm really having second thoughts because I don't want to be turned into a menopausal demon." I've read about women who have jumped up off of the cart headed to the OR and turned around and gone home. I've read about women who have canceled and rescheduled their surgeries so many times they are finally "fired" by their surgeon. For some women, fear is immobilizing.

But a lot of the time, there are things we can do to deal with this level of fear...and need to. When we face surgery with the strong conviction that we are going to die or when we are terrorized by the image of a hot flash as the fast track to doom, we're setting ourselves up with stress and worry to just make the entire situation worse. It's been well proven that lowering stress contributes significantly to our health during surgery and our recovery.

Instead, we can take back control of a terrifying part of surgery. Whatever it is, we can't eliminate the uncertainty, but we can really whack away at the terror. And we need to.

Is this surgery the right thing for me?

Take for instance ambivalence about the surgery itself. It's normal to have some doubts, but our overwhelming sense before we consent to surgery needs to be that this is the last best hope for health for us after having exhausted all lesser approaches. We have to be sure that this is the right thing for us to do. That doesn't mean that our surgeon needs to think this or our relatives need to think this. We have to believe it strongly enough to embrace the surgery with hope, not helpless doom. Until we're there, we're not ready. If you feel as though this decision is being urged on you and you ought to go along with it, you're not ready. If you don't feel you've explored all the options, you're not ready.

How do you get more ready? See more doctors. There's a good reason why your insurance company willingly pays for second or even third pre-op opinions, and it works to your benefit. You may have to see several doctors and listen to several explanations before you hear one that clicks and suddenly makes things fall into focus. That doesn't mean you can't use your first doctor as your surgeon--it just means you needed to do more research. Different doctors bring different interpretations and different communication skills. It's only prudent when looking at an irreversible surgery that we seek a broad range of opinions. It makes it much more possible to develop that necessary sense that what we choose—and that we are choosing—when we have explored our options more thoroughly.

Anesthesia fears

It's common to have a deep fear of losing control when faced with the idea of anesthesia. That's reasonable and protective, so long as it's not disabling. But if you have a deep-seated belief that it's not going to work for you, then don't go there. Talk with your doctor and anesthesiologist about other options, like spinal anesthesia. With that method, you are numb and indifferent but not totally unconscious. Maybe this would let you feel less cut off from your life, make the whole experience more survivable. It's a viable option if it reduces your fears.

Fears about after the surgery

What comes after a hyst is such an unknown for most of us. I'm doing what I can by posting on this website to make the experience a little clearer, give women a few more practical details of what they may expect. I've posted before about pain, and how you can help control your fears about it by making plans beforehand.

But that same technique applies to other aspects of healing. If you are having your ovaries removed and sudden menopause is your fear, don't let your doctor brush off your worries with the classic "you'll just take this little pill and everything will be fine." You've heard stories from your relatives and co-workers; you have been reading; maybe you've already looked at my recommended hormone/hrt resource, the Survivor's Guide to Surgical Menopause and their mailing list--you're not sure it's going to be that simple. Well then, don't let your doctor brush you off. Ask for details of his plan: when will you begin hrt, what if you experience symptoms before then, how will you know if it's not working, when will you change things if there is a problem, what will you change to? Or, even better, let your doctor know what you want for hrt and when you want to start it and how you want it to work for you.

Work together with your doctor(s) on a plan that covers all your worries and lays plans out for any contingency you are bothered about. Maybe you'll need those plans and maybe you won't. But pre-op fears are eased when we regain a sense that even if we don't know exactly what will happen, we're prepared to deal with it. And for that reason alone, it's worth the time and effort because we'll have a happier, healthier surgical experience when we're not facing featureless doom. It's okay to be nervous, but if you're seriously disabled by fears, you're not ready until you've laid them aside.

Monday, November 08, 2004

Will I be in menopause?

Women making plans for a hysterectomy often ask whether having a hyst will mean that they will go through menopause and what that will mean for them if they do. I can tell you right away that if you have your ovaries removed, you will, irrespective of your age, be in menopause when you wake up from anesthesia. If you retain your ovaries, you stand a good chance of postponing menopause for some undefined time, but as we've previously looked at here, there's no guarantee just how long that time will be.

This might be a good place to define just what menopause really is. Menopause is nothing more than your levels of ovarian hormones dropping below that level that supports fertility. When menopause happens naturally (that is, without surgical intervention), our ovaries don't just throw a switch and never produce another hormone again. Instead, a long slow decline begins a decade or more before actual menopause and continues for many years, if not decades after that. Menopause is simply one point on that long slope of hormone output, even if it happens to be one we can clearly see because we stop having periods. Because a woman in natural menopause continues to produce lower levels of hormones that continue to support her remaining, non-fertile hormone needs, she may not have very many or very disruptive symptoms.

But in surgical menopause, when our ovaries are removed, we go from ovarian function (either fertile or naturally menopaused, depending where we are preoperatively) to no ovarian output at all. That doesn't mean we have no hormones at all, however. In menopause, our belly fat contains special cells that can produce a weak estrogen called estrone. Our adrenal glands can also make estrogen from other hormone precursors, although the amount we can produce that way is somewhat dependent upon what other competing tasks the adrenal glands are facing at any particular moment. Whether or not that is enough remaining capacity to meet our non-fertile hormone needs or not, it is definitely enough of a drop that we should be considered menopausal.

Does menopause mean I'm just going to become old and wrinkled and sexless overnight?

No. That depends upon your genetic makeup (how women in your family age at menopause might be a helpful clue for what you can expect) and how well your hormone needs are met in menopause. No matter how you get there, menopause is a major life change—the biggest one we experience after puberty. This signals a number of things to your body and will affect a variety of metabolic systems. You most likely will lose collagen and find that your skin gradually becomes dryer, more delicate and more prone to showing wrinkles, although how rapidly this develops may be somewhat mitigated by genetics and meeting hormone needs. It's typical that our body shape changes as we take over estrogen production with belly fat: we may thicken in the middle and find that metabolic down-setting causes us to gain weight that it is difficult to lose without dietary modification and exercise. And there are other changes that may slowly develop. While we're not plunged into elderly bodies overnight, the fertile part of our lives is over and this will signal changes.

Do I really have to take HRT for menopause? If it only lasts a few months, can't I just put up with the hot flashes and wait it out? I really hate to take drugs if I don't have to.

First of all, let's dispose of that "only a few months" myth. Somehow, doctors have convinced themselves that it only takes a few months to adjust to menopausal hormone levels and thus recommendations for the use of hrts are for just long enough to make this transition. But this is a gross oversimplification for many women, and especially so for those without ovaries. In fact, there are two aspects of menopause that determine how it affects us and how long those effects last.

In terms of overall experience of menopause, the suddenness of the transition definitely affects the number and severity of symptoms we experience. Our bodies don't really approve of hormonal fluctuations, and the sharper the fluctuation, the more dramatically our bodies will express their disapproval with symptoms. An especially rapid change prevents us from making the many small, slow accommodations to life with low estrogen levels and estrogen provided by non-ovarian means. Generally speaking, a surgical menopause is a much greater challenge to the stability our bodies want and will cause more symptoms from the transition.

The other aspect of symptoms has to do with how well our remaining hormone needs are being met. Remaining needs? Yes, our ovarian hormones do many things besides prepare our uterus to receive a fertilized egg. In fact, they are used throughout our bodies in nearly every system. I can't go into all of these details here, but you can read much more about hormones and what they do at the Survivor's Guide to Surgical Menopause. I would encourage any woman facing surgical menopause to read through this material, as this is an important topic for our ongoing health and one we typically know very little about.

The thing about hormone needs is that while they may decrease with age, they do not disappear altogether. So if you are failing to meet your hormone needs, then you can expect symptoms to persist. You don't "get over" the need for basic bodily processes, and if you never provide the support your body needs to carry them out, you'll continue to experience the symptoms of those systems malfunctioning.

But it's also very important not to confuse HRT with drugs. It's easy to do, since they both require a doctor's prescription to obtain and they both are manufactured by pharmaceutical companies. But a drug does something to interfere with a normal body process, with the intent thereby of "fixing" something that is being a problem for us. In the case of hormones, however, we're not interfering with a normal process; we're providing the raw materials to support normal function in the face of a surgically-induced shortage. Taking supplemental ovarian hormones is more akin to someone who is hypothyroid taking thyroid hormone supplements or someone who is diabetic taking insulin (another hormone). HRTs are just different forms of either our exact hormones or a near-match chemical that has similar actions in the body.

Whether or not you need to take hormones (and I include in this category prescription, non-prescription and food sources: if it can act to meet hormone needs in the body, it is an HRT) is pretty much up to you and what you define as the level of health and comfort you wish to experience during menopause. If taking hormones is more distasteful to you than hot flashes and other symptoms, there's really no reason you have to take them. There can be some pretty serious risks to health on either side of the take-or-not HRT question, so you should research hormone actions, consider them in the light of your own personal health risk profile, and decide for yourself how you want to deal with hormone needs. There are drugs that can alleviate some of the symptoms of hormone deficit and there are other health practices that can help limit some of the risks. It's all up to you how you choose to deal with these needs.

And of course we've all heard of the happy, healthy elder who never took hormones and was just fine. I'm really delighted for her, but I have to point out that this cannot be achieved by force of will. We have little control over how well our body is genetically programmed to cope with supplying hormone needs. If yours isn't up to the task, you're not a failure and I would hope you don't punish yourself with guilt. Hormone needs, I repeat, represent basic physical processes, not optional comfort measures. We are not wimps when we choose health and wellbeing in our menopausal years.

I've heard that I should get my hormone levels checked before surgery, so that I can just take enough HRT afterwards to get back to where I know I was feeling good.

Sure, you can spend a few hundred dollars to be tested. But unfortunately, premenopausal hormone levels fluctuate constantly, perimenopausal hormone levels fluctuate wildly, and even postmenopausal hormone levels are only a momentary snapshot. There's no way to know to what extent any hormone level test corresponds to how you feel because of that moment-to-moment variability. Furthermore, if you were fertile, your needs once you are no longer supporting fertility will not be the same. With no uterine cycling to support, that level of hormones will be a gross excess postop.

The other flaw with that premise is that you can look at a test and know how much to put back into the system in HRT. Alas, but it's not that simple. There are so many intersecting influences here that there is just no feasible correlation between levels and supplementation needs. I'm not going into the details here since the Survivor's Guide does it much more thoroughly. What I want to leave you with is the simple statement that it just doesn't work that way. If you want more about the why of it, you'll need to follow the discussions over there.

If it's being menopausal that makes me look old and ugly, can't I just take as many hormones as I used to have so that I stay young looking?

Nope, not a good idea. One of the things we learn in menopause with HRT is that while enough is wonderful, more than enough is hellish. Hormonal excess raises our risks of negative effects and causes some quite unpleasant, if not dangerous, symptoms. And regardless of the risks, HRT just can't turn back time. Your body recognizes ovarian loss or natural menopause as a life transition and behaves accordingly. While HRTs have come a long way since they were first introduced, they remain a relatively crude tool. You can't entirely fool your body with them and they won't reset the clock. Menopause awaits all women; the only part we get to pick is how we respond to the needs it creates.

Saturday, October 30, 2004

Postop: Sleep

Most of us get the message that rest is pretty important to our recovery. It can be frustrating, then, to find that sleep is ridiculously elusive in that first postop month or so.

There are a lot of factors that are working to keep us from falling and staying asleep. It takes weeks to get all of the drugs from surgery out of our systems. It's common during the time we're clearing the remains of anesthesia to have vivid dreams, nightmares and disturbed sleep from these drugs' effects on our brains. There's nothing to do about this, really, other than wait out our own body's ability to get rid of the last lingering traces.

Stress is an important part of this too. Stress disorders many of our daily hormone cycles and can have destabilizing effects on our brain chemistry. Normally we rely on our circadian rhythms to guide us through our sleep and wake periods, and when they are upset, so is sleep. As we get further from surgery and relax into our healing, chemicals in our brains normalize and our bodies return to a more normal daily cycle. Unfortunately, fretting about sleep only adds to our stress and prolongs the process of readjustment.

Speaking of hormones, our ovarian hormones play a significant role in sleep. Not only do daily cycles of estrogen affect the other daily ups and downs of the hormones that guide our sleep, but estrogen itself can act on our brains to make sleep difficult. Too little estrogen often makes it hard to stay asleep, and a woman with low levels may find herself waking frequently during the night. Too much estrogen, on the other hand, tends to have a stimulating effect somewhat like caffeine, and we feel the same thing as if we'd had a double-extra just before bedtime: spinning wheels may make it hard to fall asleep, even though once we get there, we tend to stay asleep most of the night.

And don't neglect the hormone link if you kept your ovaries. They may be undergoing a period of diminished output due to the local trauma of surgery, effectively putting you into a temporary state of menopause. Whether or not they recover, the disruptions can make sleep difficult to maintain.

Then too, the very nature of our recovery also influences our sleep patterns. In the hospital, we are (of good necessity) awakened frequently and spend a lot of time in a drowsing state. By the time we get home, we're more active but still may spend a lot of the first week more in bed than out of it. This trains our bodies away from a day/night cycle of long awake periods and long sleep periods. Since we are so inactive, we have less of a need for sleep. By fulfilling our sleep needs in short incremental naps through the day, we may arrive at a nominal bedtime only to find that we really don't need to sleep. This training effect can take weeks to undue.

It's hard to get comfortable when you've just had abdominal surgery. Whether or not you have an abdominal incision, you may have a lot of difficulty getting comfortably situated in bed. It's also hard to move around and reposition yourself, so that rolling over to a new position, something that would normally cause no waking at all, now brings you to full consciousness as you laboriously untangle from pillows and covers to slowly seek another position. If you've been doing a good job drinking enough during the day and/or you're still experiencing bladder crankiness, you'll probably be waking up more to go to the bathroom, too. And because it's more of an effort to get up and get to the bathroom and then settled back down again, that's going to wake you more thoroughly than it would have pre-op and so it'll take longer to get back to sleep.

That's a lot of things working against good, lasting sleep at night. And while it's all fine to know what the cause of this might be, more pressing at 2 am in a bout of the floppy-wakefuls is what to do about it.

  1. Pain meds: Narcotic pain meds may seem like a good thing to take at bedtime to force us to relax and sleep. But they generally last only 4-6 hours, leaving you wakeful and sore before the time when you may think you're ready to get up for another day. A more durable approach to pain is the oral anti-imflammatory that has a 12-hour life, like naprosyn. Taking that before bedtime gives you plenty of medication life to let you rest comfortably through till the morning, without the wakeful effects of having it wear off. Be sure to check with your doctor, though, if you're unsure whether you can or should be using a drug from the NSAID family. After the first few postop days, using the narcotics when you're about to be especially active (and increase your discomfort) makes more sense than using them when you are in bed.
  2. Napping: It's important to get enough rest, yes, but that doesn't need to mean napping every hour through the day. During the first few weeks postop, we should be working towards more and more time awake during the day. Pacing our activities so that we spend some time exercising and then some time in sedentary, undemanding activity before getting up again is a good healing pattern. Getting exercise and then sleeping and then getting up for another hour is training our bodies away from a sleep-at-night pattern.
  3. Exercise: We do need to engage in enough activity throughout the day to need to sleep at night. Every day we need to walk a little further or on a little steeper terrain or make another cautious trip up and down stairs or something that challenges our bodies to grow stronger and helps cut down the incidence of postop constipation and complications. Every activity needs rest and no activity should leave you still tired after resting, but it's important to keep challenging yourself. It's better to repeatedly engage in small activities than go for one gut-burning grind a day, too. By making ourselves healthily tired, we're readier for sleep at night. If there's no reason to sleep, we won't.
  4. Preparation: We can clue our bodies when we are expecting sleep and ease the process of falling asleep. Before we had surgery, we most likely did this by our normal evening routines. Surgery disrupts this, so we need to consciously re-establish sleep-promoting practices. Changing into sleepwear (wear sweats or a caftan or something else comfy for lounging during the daytime), going through teeth and skin care routines, reading in bed--these are some of the things we often do normally that we let slide postop. We can also signal our bodies to relax by having a warm drink of something soothing. Sleepy tea blends (no caffeine!) or warm milk or products like ovaltine all contain mildly sedating agents that can help us through those first few moments of falling asleep. Positive imaging and relaxation routines can make sure we're not fighting ourselves, letting our worry over falling asleep work against us by keeping us alert.
  5. Patience: It's also important not to try to force ourselves to sleep just because the clock says it's time. When we're not sleepy, lying in bed fretting only makes us more wakeful. When we wake up during the night, tossing and fuming prolongs the time it takes to return to sleep. If you're not so sleepy your eyes would prefer to be closed, you may not need to be asleep. Give yourself an honest time, and then get up or do something else. Maybe you just need to turn on the light and read; maybe you need to get up and go for a pee and a drink; maybe you should get up and watch a movie from a nice recliner where it won't matter if you finally doze off. Even if all you do is get up, read half a chapter and then go to bed to fall asleep, you won't feel as though you've had nearly the struggle for sleep as if you'd instead flopped around in bed fussing for that amount of time. The idea is to set yourself up to be relaxed about sleeping so you quit being your own worst enemy.
  6. Sleeping pills?: Forcing yourself to sleep because you think you should when your body isn't wanting to is not really helping to re-establish your own innate sleep patterns. If our sleep is so disordered that we truly are going days and days without any sleep (not just keeping ourself from needing to sleep by cat-napping five minutes at a time all through the day), then there is something more going on that we need to talk with our doctor about. It's always better to deal with the underlying problem than to put a drug bandaid on top. If your doctor finds that there is no physical problem or hormonal imbalance interfering with your sleep and feels you need medication to break your present, dysfunctional sleep cycle, then short term use of drugs may be warranted. But do your health a favor: don't just make reaching for a bigger hammer to knock yourself out your first response to the problem.

These all sound like pretty simplistic things, but none of them really offers a "quick fix." I know very well that we often prefer the easy solution of a prescription to solve anything we perceive as a problem. But the sources of postop insomnia aren't going to go away quickly or be cured by one simple thing. We need to give ourselves time to regain our normal patterns and to clear the effects of surgery from our systems. Postop insomnia is generally something that requires healing, not treatment.

It's easy to believe that we need to heal our surgical incisions because of the discomfort they cause us. It's harder to see the need to heal other systems in our bodies when we can't see those "cuts" in our normal function. But postop insomnia is another signal that our bodies haven't gotten over surgery yet and need our active support. Part of a good recovery is rebuilding ourselves to take care of all our needs.

Wednesday, October 27, 2004

Pre-op decision: surgical route

The vaginal vs abdominal route is endlessly debated. Going for the bottom line right away, the "right" answer is clearly: the one that gives your surgeon the absolute best field of vision/access for what you need done.

That said, it's widely believed that the vag route, because it skips that belly incision, has an easier recovery. In the very first few days, that may be the case, but it's been my observation that over the entire recovery period, there's not a whole lot of difference.

The key point to remember is that it is the internal healing that is the big job, and that is the same whichever surgical approach is used. In fact, I've noted time and again that it's the women who have a vag hyst who are more prone to overdoing in the early stages, just because they aren't looking at that incision and treating themselves as cautiously. Some difference does exist between a bikini and a vertical incision, since the latter extends further up into the belly and is more noticeable with muscular effort. But even so, the length of time incisional healing affects you is really brief compared to the interior healing. So try not to agonize over this one.

There have traditionally been three factors, roughly, that determine suitability for the vaginal procedure:

  1. Is there room to get the uterus out through that route? Obviously, with very large fibroids and for many women who have never given birth, that answer would be "no."
  2. How experienced is the doctor with that version of the procedure? A vaginal procedure is in fact much more complex. Experience counts in avoiding negative surgical outcomes and quality of final results.
  3. Can the doctor see everything he needs to? The vaginal route obviously involves a more limited field of view. Those needing ovarian evaluation or considered cancer possibilities often require the better visibility of abdominal incisions.

I was told that since the doctor couldn't "see" everything that he was doing, in many cases, there was damage done to the other organs.

Exactly. The addition of a laparoscope helped this somewhat, as that technique became more common, but this is still a much more remote viewing that calls for considerably more expertise on the part of the doctor and relies much more on the soundness of the pre-op diagnosis (as opposed to visually checking everything out).

I have fibroids in and around the outside of my uterus. I don't want anything missed. Also I read that they are finding that a lot of nerve damage is being done to and around the vagina and sex is often affected greatly.

So many things are relative to your own particular anatomy, what exactly the pathology is for which you are having the procedure, and your own surgeon's practice level. But in general, yes, because of the awkward approach angle, there tends to be more manipulation of internal organs and nerves and such than with the abdominal approach. And because things are harder to see, there is a greater chance of missing things or causing damage with a vaginal approach. Additionally, women who have spent hours in the stirrups for surgery are more likely to experience back pain or back/leg nerve irritation in their immediate postop period.

In fact, the vaginal procedure, as a rule, takes longer (longer time under anesthesia) and requires more internal work (sutures, healing) than the abdominal. The more rapid initial bounce-back due to not having the abdominal incision is not always a service, since the internal healing that goes on is greater, even if less obvious. More women with vag than abdominal hysts end up going back for revisions when they have damaged this or that during the healing process by doing too much before they are ready and/or getting an incomplete heal. The famous 6-8 week recovery period is for the internal healing, not the superficial incisional healing—something that it is all too easy to overlook with the vaginal procedure.

I understand that in vaginal surgery, the cervix is taken out . I want to keep everything that I possibly can.

Yes, it must be, because of the way the surgery is done. Many abdominal hysts also remove the cervix, and by and large the problems that used to be associated with this, of later losing support for internal organs, are eased by more current techniques that emphasize reattaching the tendons to provide good abdominal floor support. The argument now focuses solely on whether or not you have a strong cervical stimulation component in your orgasms. Those who do will probably miss it; those who don't will probably get along just fine without it. Remember, of course, that with cervical retention you will continue to get a light period (and may need hrt to cycle you, if you have your ovaries removed); you will also continue to need regular pap testing for cervical cancer.

My own decision was for an abdominal, even though I was offered a vag (reluctantly). Because my pre-op diagnosis was unclear about the actual state of my ovaries, I wanted the doctor to be able to examine things thoroughly. He was relieved, since the vag route was only conditional, with an abdominal to follow if he found anything suspicious that needed further exploration. I did, however, bargain with him that he would start with a horizontal incision (the "bikini cut"), which I feel disrupts abdominal muscle fibers less and promotes faster recovery of abdominal tone. We agreed that he would start there and only extend to a vertical (making a "T" incision) if what he saw warranted further removal of affected organs. This was written into the operative permit, specifically.

As it turned out, I did not need the vertical extension as my ovaries were only rather suspicious and not yet fully malignant, and he was able to do a thorough examination of the entire abdominal cavity from the horizontal incision once he got that mammoth uterus out of the way. For me, the peace of mind in knowing that such a thorough exam had been done more than made up for the additional inconvenience of the incision.

And, truly, I didn't have a lot of recovery difficulty. I was walking within a couple hours of returning to my room, and within two weeks was walking a mile or more without problems. I switched to oral anti-inflammatories within 24 hours of surgery, never using either the IV morphine or other narcotics (I did get regular doses of IV Toradol, a potent anti-inflammatory, in the first 24 hours). Among other things, I credit this with not having had problems with gas or a first bowel movement (although I did hit heavy fluids, fiber, and a couple stool softeners to ease things along, in addition to the activity).

So for me, the decision was to do nothing to compromise either my surgeon's best possible technique or best possible examination, and in return for that I found the abdominal incision to be no dire cost. Everyone will have different experiences, but those are the things I found worthwhile to weigh in making the decision.

Monday, October 25, 2004

Bladder Suspension

Did your doctor say you might be a candidate for this procedure? Here's what he's talking about:

Friday, October 22, 2004

Is a hysterectomy like a C-section?

Although many women come to a hysterectomy as novices to surgery entirely, a certain number have previously had a child delivered by Caesarian section. Because this is an abdominal surgery affecting the uterus, it's natural to try to compare the two experiences as part of envisioning what hyst recovery will entail. However obvious this comparison may seem, the fact is that they really aren't equivalent surgeries.

First, there is the experience of the C-section itself. There are so many variations in pain tolerance, not to mention both birth and hyst experiences that I don't quite know how to find a common ground. There are women who are inconvenienced by both; women who can say yes, it wasn't a picnic but I survived it okay; and women who think it was the most exquisite agony they ever experienced or could conceive of experiencing.

What I can tell you is that from reading many years of women's reactions, the majority admit discomfort, a great many admit pain of some degree that was of limited duration and dealt with adequately by analgesic drugs, and a very limited few (and most often those are ones with especially complex suegeries, poor care, or who develop complications) report truly unbearable or excruciating pain. Depending upon how you experienced childbirth, you may have gained a clue about your own tolerance for pain.

The other aspect, and it's a very important one in developing your expectations of how your hyst will go, is that because you're talking major surgery (that is: cutting, removing, rerouting stuff internally), you are talking a much more prolonged recovery than childbirth, where it is more a matter of simply returning to a previous state (even in a Caesarian, there is little disruption of abdominal contents other than to heal some very basic incisions). It's a common myth that a hyst is "just like a Caesarian" and this really can lead to shock and disappointment later (or, among friends, co-workers, and the whole other rest of the world who may feel free to comment on your condition).

But in the course of a hysterectomy, your bladder is peeled loose from your uterus, many things are cut (nerves, ligaments, blood vessels), your ovaries and their supporting structures may or may not be removed, your vagina will be given an artificial ending, and all of the support that used to derive from your uterus and its attachments has to be relocated to hold up the end of the vagina, the bladder, and your guts. On top of this, your other organs are handled, pushed out of the way, rinsed off, and then reassembled. There are sutures and sutures and staples and multiple closures to hold all these things back together again. The tissue damage is higher, you are under anesthesia longer and with more drugs, and your risks of infection are higher. And that's assuming you aren't also having endo removed, scarring cut apart, bladder suspension, or rectocele/cystocele repairs done. So this surgery is much more complex than just making a slit, removing the uterine contents, and sewing the slit closed again. And it takes a correspondingly longer time to heal and heal well.

I'm not trying to intimidate you here, but rather to make sure that you're clear on what to expect. It's not by any means an impossible or even wildly difficult experience, but it is important to be realistic in all your expectations...so it's very good that you are thinking and looking for a conceptual framework to base your expectations on.

But "much worse" is not exactly how I would term it. It will take longer to get a good recovery, so if you measure success in time elapsed, you will indeed find this one more demanding. Pain? There is no excuse for either one to hurt more than the other, for pain relief is pain relief, irrespective of cause. Don't settle for less than you need, but also remember that it is not the role of pain medication to make you oblivious. A reasonable objective is that you will be in minimal discomfort while lying still and tolerable discomfort when moving around and right significant discomfort if you do something inadvisable for your level of healing. It is also reasonable to expect that you will be aware of and guarding your surgical site from discomfort for the longer healing period.

But many many women report that their hyst post-op discomfort was really not much worse than significant period cramps and in many cases was considerably easier than the chronic gynecological pain some women experience. Your goal as you heal is to be guided by your discomfort, such that if you begin to experience it, you need to slack off and not stress your healing.

Maybe this will help you get a better handle on the situation ahead of you than just the scary "worse" label. It's doable, it's work, it's not pleasant but it's not gruesome. There is always someone who has complications, who has a bumbling doctor or inept staff, who has a different personal or cultural definition of pain tolerance, and those with problems always have more to say about something than those who found an event manageable. If you can try to hang onto this sort of perspective, I think you'll find that you too will be able to handle this surgery pretty satisfyingly.

Wednesday, October 13, 2004

Postop: Pain

Because many of us come to a hysterectomy as surgery novices, one of the things that worries us most is the prospect of pain. Chat around at the water cooler or the hairdresser's and you'll hear plenty of scary stuff. But is that realistic? No, not really. Let's look at what we're facing.

You're entitled to a plan

No matter what previous experiences you may have had with surgeries and pain, a minimum expectation of the pre-op planning process is that you and your doctors develop a pain management plan. You should know how they anticipate dealing with the expected pain, what they plan to do if that is not adequate, and what alternatives they are holding in reserve. You should also know when you may have medication and how to get it, including what to take home with you and what to do if you run out. This is very very basic (however much doctors take it for granted and don't discuss it), and you have every right to ask for a discussion of it and to participate in making those decisions.

Immediate postop pain management

One thing that can be beneficial in dealing with pain in the first hours after surgery is the use, from the Recovery Room on, of a relatively new anti-inflammatory called Toradol. It is given IV, regularly, and it seems to keep the level of pain down such that narcotics may not be required or may be required only in lesser amounts than when they are used alone. It also seems to ease the transition to oral meds, particularly of the long-acting NSAID family (such as the 12-hour dose of naproxen), and does not carry the effects of the opiates (in either allergy or constipation).

[Update 12/20/04: FDA warning about naproxen: The FDA has issued warnings about possible heart damage that may be caused by using naproxen. More on this topic in this post.]

It is also reasonable to ask your anesthetist to medicate you for nausea before you wake up in Recovery, rather than waiting for you to request such medication because you are already nauseated. If you make this request at your pre-op appointment, they should be willing to honor it. And, generally speaking, if you can get past the immediate post-op period, nausea should no longer happen to you. In fact, nausea after the first few hours typically means you're being nauseated by something you're receiving after surgery, such as your pain med, not things you received during surgery.

Two fairly common pain management setups are the patient-administered IV and the epidural block. The former is a pump, connected to your IV, that contains morphine or demerol—very potent narcotics. The pump is set for a maximum dose per hour, but you may trigger it to deliver a dose whenever you need it, up to that maximum. This allows you to pre-medicate before doing something that you feel might cause pain (like getting up) and allows you to control the amount of medication you get. This pump is typically used for one to two days, and is gradually replaced by oral medication.

The epidural involves a pump supplying numbing medication into your spinal area, to block sensation from the lower part of your body. It is generally used in conjunction with spinal anesthesia. Women who use it tend to speak very highly of it, especially in terms of promotion of early mobility. It is only left in place for a day or two.

Another, lesser-used but still valuable technique is injecting the area of your incision with numbing medications or running a small continuous drip of medication to that area. This may or may not need to be your total pain coverage.

How bad will it be?

The goal of pain management is not oblivion. Even the best drugs cannot obliterate your awareness that you've had major surgery and your body wants you to be really really careful with it. There are also some tradeoffs with narcotic pain medications that need to be kept in mind: too much will cause you to stop breathing, and excessive use can cause respiratory suppression and pneumonia predisposition as well as increasing postop constipation.

The goal of pain management, then, is making the discomfort tolerable. Note that I don't say "pain." Rather, you are aiming for a level of not-too-bad when lying still and tolerable while moving and "ouch!" with injudicious movement. You have a right to this amount of coverage, but you may need (or you may need someone with you who will do this) to advocate for your needs with busy nursing staff. If your nurses are not responsive to your needs or you feel you are undergoing excessive delays in obtaining medication, you should contact your doctor to let him know this. Even during the night, there will be an answering service that can have the doctor on call for your surgeon's practice get back to you. You should not be left in pain due to lack of medication and the medication your doctor orders for you should provide adequate relief. If you have received your limit of pain medication without obtaining acceptable relief, your doctor should be able to switch to a different drug. We all have different physical responses to different drugs, and so some drugs work for some of us better than for others. The goal should be adequate pain relief.

What about the risk of addiction?

The addictive potential of postop narcotics is very low because you are taking them for pain relief, not for the sensation of taking the narcotics themselves. Taken in the amount necessary to control pain, the pain "uses up" much of the action of the narcotic and it does not provide the sensations that cause addicts to seek it out. The duration of postop use is not at all close to the amount of time required to create any physical addiction. Neither you nor your doctor should stint on your legitimate use of narcotic medications for pain relief.

That does not, however, mean that you should not take them for the shortest necessary time. Narcotics carry negative effects as part of their normal mechanism of actions. For example, they are quite constipating. Since gas and bowel motility are some of the most pressing concerns in the first couple postop weeks, it doesn't make sense to continue adding to that problem by taking narcotics longer than necessary.

The usual practice is to be on IV or injectable (narcotic) pain meds for a day or two postop. These are gradually replaced by oral drugs, usually those containing a narcotic such as codeine. Codeine and other oral narcotics have the same constipating effects as the injectables. So while they may be good at controlling pain, they are also not a great long term management drug. Many women go directly from injectables/IV narcotics to oral anti-inflammatories, or use anti-inflammatories to stretch the effects of oral narcotics. In the first few postop weeks at home, anti-inflammatories can gradually replace narcotics while providing still-adequate coverage.

One of the most convenient anti-inflammatory drugs is naprosyn (naproxen), because it has a 12-hour duration of action. This means you can take it at bedtime and still wake up with some in your system in the morning. Using the 4-6 hour anti-inflammatories can mean waking up in the morning in discomfort. Since some asthmatics or those with cardiovascular disease may be sensitive to this whole family of drugs, be sure to ask your doctor about what drugs you should take even when you are ready to leave the narcotics.

Now, all of this presupposes that you are not already on a pain management program or do not have an addictive problem. If this is the case, then you will obviously need to involve your therapists in your operative planning so that you meet your increased pain control needs without derailing your present level of control. The fact of a previous narcotic addiction should not mean that you cannot control your pain during your recovery, but it will obviously mean that you have a greater need for pre-planning and monitoring the situation.

Pain and medication on discharge from the hospital

By the time you are released from the hospital, you should be able to get around and get by, within the limits of exercise tolerance, on fairly mild oral medications. The gas/constipation problem is the source of the most discomfort in the first post-op week or so, and it yields better to specific medications/approaches (lots of fiber, drinking lots and lots of liquids, exercise, stool softeners) than to pain meds (and opiates are especially bad in that they slow your bowel activity down and compound the problem).

What about if my prescription runs out and I'm still hurting?

Your doctor sends you home from the hospital with a standard prescription. That doesn't mean that this is all you can have. If you have used the pills as directed and find that you are running out and will need more, call your doctor's office and let them know. Often, they are more than willing to call a refill to your pharmacy. Other times, they may suggest alternatives that will be effective for the point you're now at in recovery. Whatever the plan, don't feel you have to suffer once the first prescription runs out.

Do be sure, however, that you understand how and how often your take-home pain meds are to be taken. Typically the prescription reads something along the lines of "Take 1-2 every 4-6 hours as needed." That means that you may take them that often (if you need that level of pain relief), not that you must take them that often (to get any relief). All too often women in the fluster of getting ready to be discharged from the hospital are handed a fistful of papers and hear only "2 every 4 hours" and just tear through their prescription and wonder why, a few days later, the prescription that they thought was to last them till their two-week checkup is all used up. Those dose intervals are the most frequent at which you can safely use that medication; it's fine if you don't need to take it that often or if you find that you need only 1-2 in a whole day, just to give a little extra boost to your non-prescription medications.

On the other hand, if you need more medication than that or you feel that even at the largest/most frequent dose you're not getting adequate coverage, it's a good idea to call your doctor about this as well. Your prescription is based on your doctor's expectations of how you should be doing, given your surgery and the speed/extent of recovery he sees when he visits you in the hospital. If you are not progressing as he thought you might, you may need a recheck to be sure everything is going as it should. Your doctor makes treatment decisions based on what he sees in the hospital; he can't see you once you are at home, so if things change, it's your responsibility to let him know that.

You should expect, and demand if necessary, a reasonable and adult discussion of these things at your pre-op appointment. If your doctor is not willing to allow your participation in pain management planning or to discuss his plans with you, then you might be well advised to seek another consult. A surgery is about your needs, not the doctor's.